Author Topic: Sjogrens treatment side effects  (Read 34165 times)

gold55

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Re: Sjogrens treatment side effects
« Reply #45 on: October 13, 2011, 08:50:22 AM »
Jason, So far I've had 3 Ophthalmologists plus an OD say that they can't remember seeing any toxicity in the macula from Plaquenil.  Remember, I'm in a University practice so we see the worst of the worst that other private guys don't want to deal with.
Another product recommended to me by eye specialists is the "Thera Tears Nutrition".....I was taking fish oil and then Krill Oil for years which ended up giving me more heartburn/indigestion issues than I ever thought it would (krill is pretty strong) so I switched to Thera Tears Nutrition which has the Omega 3 but lots of Vit E and a fish oil/flaxeed combination.  They say it may help with eye as well as mouth dryness and I sadly was leaving vitamin E out of my supplements which was no good.  I don't have any indigestion or fishy taste with this altho I don't take the recommended 3 per day I feel it is helping me like my other krill oil supplements but now with lots of Vit E and flaxeed mixed with fish oil.  I get 90 capsules for $14.99 a bottle.  Vit E is so important for our bodies and it helps with the metabolism of the Omega 3's.  Just a suggestion.  If you can't find it OTC ask the pharmacy because sometimes they just stock it behind the counter but you don't need a prescription.  Lots of folks who had Lasik and were left with real dry eyes really like this product!
« Last Edit: October 13, 2011, 09:01:36 AM by gold55 »
Dx#1:  dx changed to Sicca Syndrome + UCTD (how wonderful)
Dx#2:  Osteoarthritis and high cholesterol
Meds:  my golden retrievers, my doodle, otc tylenol, ibuprofen, mobic, vitamins, omegas, oral pilocarpine, liguid chondroiten/glucosamine with

jasonsmith

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Re: Sjogrens treatment side effects
« Reply #46 on: October 13, 2011, 09:09:10 AM »
Jason, So far I've had 3 Ophthalmologists plus an OD say that they can't remember seeing any toxicity in the macula from Plaquenil.  Remember, I'm in a University practice so we see the worst of the worst that other private guys don't want to deal with.
Another product recommended to me by eye specialists is the "Thera Tears Nutrition".....I was taking fish oil and then Krill Oil for years which ended up giving me more heartburn/indigestion issues than I ever thought it would (krill is pretty strong) so I switched to Thera Tears Nutrition which has the Omega 3 but lots of Vit E and a fish oil/flaxeed combination.  They say it may help with eye as well as mouth dryness and I sadly was leaving vitamin E out of my supplements which was no good.  I don't have any indigestion or fishy taste with this altho I don't take the recommended 3 per day I feel it is helping me like my other krill oil supplements but now with lots of Vit E and flaxeed mixed with fish oil.  I get 90 capsules for $14.99 a bottle.  Vit E is so important for our bodies and it helps with the metabolism of the Omega 3's.  Just a suggestion.  If you can't find it OTC ask the pharmacy because sometimes they just stock it behind the counter but you don't need a prescription.  Lots of folks who had Lasik and were left with real dry eyes really like this product!

Thanks. Let me know what you find out when you see the retina specialist.

I've got a bottle of that Thera tears. I bought it at my eye doctors office at my last visit. Though, I already had a big jar of Omega 3 and also the Flaxseed. But I figured I'd take the Thera Tears to try. I take 3 a day.

From what I've read. Is that it is possible to have eye problems from Plaquenil even though the eye exams are good. Though there are some docs apparently that didn't know what they were looking for as they missed the Plaquenil toxicity in the eye exams, then people kept losing their vision.

If my Rhymy wants to do Plaquenil. I'll probably give it a try and keep it at a low dose.

gold55

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Re: Sjogrens treatment side effects
« Reply #47 on: October 13, 2011, 09:15:15 AM »
Once your insurance company knows you want an Ophthalmologist due to medical reasons......there should be no reason you can't see one.  Get a "retinal specialist" and you won't see any "misses" when it comes to finding toxicity in the retina!
Dx#1:  dx changed to Sicca Syndrome + UCTD (how wonderful)
Dx#2:  Osteoarthritis and high cholesterol
Meds:  my golden retrievers, my doodle, otc tylenol, ibuprofen, mobic, vitamins, omegas, oral pilocarpine, liguid chondroiten/glucosamine with

jasonsmith

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Re: Sjogrens treatment side effects
« Reply #48 on: October 13, 2011, 09:30:46 AM »
Once your insurance company knows you want an Ophthalmologist due to medical reasons......there should be no reason you can't see one.  Get a "retinal specialist" and you won't see any "misses" when it comes to finding toxicity in the retina!

Well, I don't have eye insurance. I get Medicare in a little over a year. Not sure if that has eye insurance. But I pay out of pocket for the eye doctor visits. I'll see if the place I go to will let me see the Opthamologist. I'm betting a Retinal Specialist will probably be a long drive and expensive. I'll see what kind of eye coverage I get when I get Medicare to see if seeing a Retinal Specialist would be covered.

gold55

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Re: Sjogrens treatment side effects
« Reply #49 on: October 13, 2011, 09:36:05 AM »
Medicare should cover all "medical" and eye problems from SS is "medical" NOT routine eye care!  For example...I saw an MD for possible dry eye from SS and my insurance paid.  I saw an OD for a refraction for new glasses and my "routine eye care coverage" paid for that.  Two separate types of coverage.  You'll be fine once you start Medicare.  Jill
Dx#1:  dx changed to Sicca Syndrome + UCTD (how wonderful)
Dx#2:  Osteoarthritis and high cholesterol
Meds:  my golden retrievers, my doodle, otc tylenol, ibuprofen, mobic, vitamins, omegas, oral pilocarpine, liguid chondroiten/glucosamine with

jasonsmith

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Re: Sjogrens treatment side effects
« Reply #50 on: October 13, 2011, 10:14:24 AM »
Medicare should cover all "medical" and eye problems from SS is "medical" NOT routine eye care!  For example...I saw an MD for possible dry eye from SS and my insurance paid.  I saw an OD for a refraction for new glasses and my "routine eye care coverage" paid for that.  Two separate types of coverage.  You'll be fine once you start Medicare.  Jill

What coverage do you have for routine eye care? As I don't believe Medicare covers that.

Oh, another reason why I was hesitent to rely on my Optomitrist. As I had asked him about the Plaquenil. And about the possible eye problems with it. And I was wondering if he could check for toxicity as some eye docs had missed it. As Plaquenil is something I may be taking in the future. Then he mentioned pretty much there is no point in treating Sjogrens as you're eyes will get dryer as you get older whether you have Sjogren's or not.

Thanks

anita

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Re: Sjogrens treatment side effects
« Reply #51 on: October 13, 2011, 01:11:50 PM »
Jason,

I have Medicare (for the last 14 years) and all my ophthalmology appointments are "covered" by Medicare.  This includes all exams, doctor, etc.  Why are you having to wait for Medicare? 

I would say almost 3/4 of the members here take plaquenil and I only remember (but I forget sometimes) one person with an eye 'reaction' (not toxicity) to plaquenil.  Of course there are other side-effects (GI, etc) that others have experienced, but I don't think anyone has reported toxicity here.  I would think if it was as common as you seem to be reading about, then there would be people here who have confirmed cases.  Gold has provided some great info and others here as well. Your anxiety about the plaquenil may outweigh the benefits and effect your overall health.   It is very important to be 'comfortable' with your treatment.
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

jasonsmith

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Re: Sjogrens treatment side effects
« Reply #52 on: October 13, 2011, 01:17:39 PM »
Jason,

I have Medicare (for the last 14 years) and all my ophthalmology appointments are "covered" by Medicare.  This includes all exams, doctor, etc.  Why are you having to wait for Medicare? 

I would say almost 3/4 of the members here take plaquenil and I only remember (but I forget sometimes) one person with an eye 'reaction' (not toxicity) to plaquenil.  Of course there are other side-effects (GI, etc) that others have experienced, but I don't think anyone has reported toxicity here.  I would think if it was as common as you seem to be reading about, then there would be people here who have confirmed cases.  Gold has provided some great info and others here as well. Your anxiety about the plaquenil may outweigh the benefits and effect your overall health.   It is very important to be 'comfortable' with your treatment.

I'll probably try it. A few months ago I had a bad bought of dry eye to where I woke up with them on fire. And they burned for a couple of weeks. And my eyes have been dryer sense. Then recently my mouth has gotten really dry to where I can't really sleep. I'm hoping if I get started on treatment soon, the recent worsening of the dryness will reverse.

Meld256

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Re: Sjogrens treatment side effects
« Reply #53 on: October 13, 2011, 02:00:57 PM »
jason,

Back to the fact you are seeing an optometrist, not an opthamologist; 2 very different things.  The optometrists do not and cannot treat medical issues for the eyes. 

This is really shown by the fact you say the optometrist told you that there is no sense in treating dry eyes from Sjogren's.  They are not trained to give that kind of info! And as we know, that is just wrong.

If you decide to start on Plaquenil, it makes no sense to use it part of a week and skip part, in my humble opinion.

I hope you can see a doctor, a rheumy, a PCP with whom you can talk over your options and your concerns.  We can go on an on here about what your concerns are, and you can (and have the right to) question every suggestion, every article and everything written on the web.  Sometimes we just gotta make up our minds and go with it!  ;)

gurs

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Re: Sjogrens treatment side effects
« Reply #54 on: October 13, 2011, 02:52:31 PM »
Ditto what Meld256 said......

gursie
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

Carebear

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Re: Sjogrens treatment side effects
« Reply #55 on: October 13, 2011, 04:43:16 PM »
Jason,

As every here has said, ophthalmologists are actually medical doctors where as optometrists are not.   Your rheumotologist should insist that you are under the care of an ophthalmologist if you are on Plaquenil , and he should be the one to refer you.  That's how it worked for me.

My ophthalmologist, who works in a teaching hospital, has never seen any patient in their eye clinic with damage from Plaquenil.  You really need to stop stressing about it.  Plaquenil is the safest, most effective drug we can take.
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

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Iris

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Re: Sjogrens treatment side effects
« Reply #56 on: October 13, 2011, 04:52:50 PM »
I switched to Thera Tears Nutrition which has the Omega 3 but lots of Vit E and a fish oil/flaxeed combination. 

They are now saying that men taking supplemental vitamin E may be increasing their risk for prostate cancer by up to 17 percent..  But they also said The new finding comes on the heels of a study released Monday that found that dietary supplements -- including multivitamins, which often contain vitamin E -- are associated with worse health in older women.

They need to make up their minds if it's good for us or not..
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gold55

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Re: Sjogrens treatment side effects
« Reply #57 on: October 13, 2011, 09:05:17 PM »
No kidding Iris!  My Dad used to tell me when I was young that taking Vit E everyday was the best thing I could do for my health.....but I didn't take his advice.  Now with the moisture and mucus membrane issues with SS I would think Vit E would be great and great for healing cracks in skin, etc.  whether the vitamin is in or out of the capsule!  All I know is that I had to stop taking my cherished Krill oil because it started interfering with the acid content of my stomach plus I'm sure I've been a lot more nervous since my diagnosis.  So, with that said I tried the TheraTears Nutrition and I have no problem with digesting it and no fishy after taste so I figure this is better than no fish oil at all!  I thought the Vit E would just be an added bonus for my body :)  Everything we read and see on TV is so doom and gloom and going to kill us before we get a chance to sue the manufacturer and the doctor who prescribed the killer medication!!!!  If there are actual scientific reports out there stating that Vit E is bad for your health please refer me to them.  My focus has mostly been on Vit B complex, C and Calcium, D, Magnesium and Zinc.  E is a new one for me ;)   Thanks Iris for the new info! 
Dx#1:  dx changed to Sicca Syndrome + UCTD (how wonderful)
Dx#2:  Osteoarthritis and high cholesterol
Meds:  my golden retrievers, my doodle, otc tylenol, ibuprofen, mobic, vitamins, omegas, oral pilocarpine, liguid chondroiten/glucosamine with

irish

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Re: Sjogrens treatment side effects
« Reply #58 on: October 13, 2011, 09:53:00 PM »
Jason, I don't know where you are getting your information, but the eye issues are exceedingly rare. Reason being, the plaquenil is being given to AI patients at a pretty low dose. The dosage schedule for malaria is many more mgm than is used for the AI diseases. The lower dose seldom causes much eye involvement.

This subject has been hashed over many times in the 6-7 years I have been on this site. There are many people here who see optholmologists who have said that they have never seen a patient who had problems with the plaquenil.

And, any of the literature I have read (and I have read a lot) says that with the regular eye exams the vision issues are caught early and when the medication is discontinued the eye issues resolve. I have a daughter-in-law who is one of 2 optometrists working with 6 optholmologists in a metro setting.

I started the plaquenil 3 weeks ago and will have an eye exam soon. I get yearly exams so I have a baseline already. She just told me that the plaquenil causes very few problems and they are reversible when caught early. These eye issues don't happen overnight. They come on slowly and are very likely dosage related as far as length of time the meds is taken. I am referring to people who may have eye issues. The length of time we take Plaquenil is of importance when a person has eye involvement. Especially if the person has taken the plaquenil without having the regular eye exams.

I don't understand your obsessive concern about the eye issues.  I guess I would be much more concerned about the severe eye issue(including blindness that can occur with the corneal issues. We have had more people on this board suffering from severe and debilitating eye issues than we have had people with eye issues from the plaquenil. It is your choice not to take the plaquenil. My biggest fear is that you are causing much anxiety in other people who are considering the plaquenil.

I also think that there are more people who have had to quit the plaquenil because of increased blood counts than because of eye issues. Irish ;D

gurs

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Re: Sjogrens treatment side effects
« Reply #59 on: October 14, 2011, 03:31:00 AM »
I agree with Irish totally..... Also,we all dont want to have to take medications, but, sometimes we have to. We dont have many options, but, you may find one that really helps you feel better, and stops the progression of the disease as well. Everything is a gamble. You and your doc have to make the best decisions for you.

Gursie
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements